How can these horrific pains be invisible

[Julietsmombless2015]

I feel like my ankles are broke too they only look different to me.My hands are so shaky I often get asked why? My tailbone feels broken most if my bones do.Is this normal. I have the Gi problems memory loss which embarrasses me.I can't retain any new memories. I forget thing like I put my pills up because I have a baby. I lost them 5 min layer I had no memory of where I hid them. It's making me feel crazy on top of the fact that I lost my pain meds somewhere.

[Freckle1000 Volunteer]

Juliet !

I saw your other post about feeling disconnected. Get yourself to your GP and Specialist ASAP. Have them to go through every drug you are taking - one by one and check for potential drug interactions that might be causing some problems and explore all possibilities for alternative meds.

Sorry to be so blunt, but also get yourself triple checked for the possibility of a Lupus Flare. Feeling fogged out and having a poor memory could be a symptom. Its how my SLE sometimes expresses itself.

[Julietsmombless2015 in reply to Freckle1000]

I am in the middle of a flare up but I have beenut for over a year with no change for the better as far my doctor was surprised that I was still able to walk because my numbers for inflammation came back so high I told him it was not without difficulty it's very hard for me to walk but I still choose to I can tolerate a large amount pain due to the amount of kidney stones that I have passed in my lifetime I do think that my depression medication needs to be either changed or upped I was told that medication for ADHD can help the brain fog in memory loss in the fatigue he talked about that my last appointment so maybe that'll be in new prescription that I can add on to the 20 some pills I'm on now I was optimistic about getting better after they gave me the Plaquenil I thought maybe six months something like that but now that it's turned into a year and getting worse I don't know I don't know what to think anymore it's just depression and I usually would hide myself in my room away from everybody but I have a 1 and a half year old baby her name is Juliet and I have to care for her and I have to put on a fake smile everyday and do what I have to do regardless to the way I feel my only way I express how I feel is through this site other than that I keep these things to myself

[lupus-support1 Administrator]

Congratulations on the birth of your baby! Your hormones will be all over the place! The memory is a good example: you are tired, excited, doting on your new baby - I do not know if you have other children - but you are probably exhausted too!

I cannot comment on your aches and pain, but I strongly recommend you speak to your doctor and midwife.

It is the case that some women will have a flare after the birth of the baby, so that you need to see your doctor asap.

By seeing your doctor, s/he will be able to examine and advise you. Don't look for answers anywhere else and don't assume that a non-medical person or even a medical professional can determine what is going on. The only person will be your own doctor.

Therefore, phone for an appointment asap.

With good wishes,

Ros

[Julietsmombless2015 in reply to lupus-support1]

I am I see doctors regularly my child is already 15 months old now so it's not the hormones turn that anyways I guess it could be the hormones from lupus itself I don't know I just know that it's just getting worse and I was told that they may add a medication for ADHD with my other medications to help me with the fatigue and things of that nature I guess they're using it more and more now for Lupus patients here I live in Ohio and my name is Sarah by the way Juliet is my daughter's name the one year old I have my appointment with the doctor for lupus in August my PCP said that he may add a couple more medications to try to get my numbers down this next time around but I'll have to wait until August to see ipcp primary care physician I see him this month in about 10 days so I think I might try the medication for ADHD even though I know I don't have that condition he said that it could help with the way I'm feeling now I'm just so fatigued so tired it's just so hard to do anything

[Freckle1000 Volunteer]

Hi Sarah,

It really sounds like you're in an incredibly difficult situation right now with a new baby and a Lupus flare.

I hope you can just hold on a little longer and get through it - because as bad as things are - extreme situations like this are temporary and although it might be hard to imagine right now, things will get better.

I'm willing to bet that when you see your'e specialist he will put you on some new immuno suppressants that will eventually resolve a lot of your current problems. It might be worth ringing his practice to see if you can see him/her earlier.

If possible it would be better if you could see a specialist on a more regular basis. eg - every three months ? to monitor how your lupus is going and making sure you can find the best medications for you.

I'm also truly hoping you have some caring people in your life that can lessen your work load and help you out a bit ? (or perhaps a social work support system/district nursing??) Forget the brave and happy face. There's no shame in asking people for help when you're unwell. You need to rest if and when you can. Getting some practical help with your baby now and looking after yourself now will help you both in the longer term.

Also hoping the ADHD medication will help you get through this. I think its right that the antidepressant medication should be closely looked at to see if its the right one for you.

This is only from my personal experience, and I think I'm probably in the minority as I'm pretty drug sensitive, but for me antidepressants makes my brain fog and feeling of disconnection worse. I know you need something to get you through this period of your life, but just make sure the meds they give you - do actually help.

I have a bit of a dodgy memory and when I'm testing new - potentially mind altering drugs I keep a diary of how I feel before and after taking a drug - and how long the effect lasts in my system - whether its helpful or not, etc. I take this diary in with me to my Doctors so they can have a clearer understanding of whats going on because I've usually forgotten the finer details once I get to see them.

Again, I'm really hoping you can hold on and get through this really rough period in your life.

Just my amateur opinion, but I think once they get the Lupus under control you will feel better not only physically, but psychologically as well.

xoxoxoxoxox

[SecretlyDisabled7 in reply to Freckle1000]

Which immunosuppressants do you know? I am very curious. Especially as I lay here with a rash and nothing working in my body. I already take plaque nil and the usual meds, plus pain medication.

[Freckle1000 Volunteer in reply to SecretlyDisabled7]

Hello Secretly Disabled. I'm a bit unwell right now - but will reply when I'm a bit clearer headed.

X

[Freckle1000 Volunteer in reply to SecretlyDisabled7]

Hello again - Secretly Disabled.

There are plenty of different immunosupressant medications - all suited for different levels, and manifestations of Lupus.

My advice would be to hang out the the ( healthunlocked) Lupus UK site to get more detailed feedback. - They also have good medical reference reading material connected to the site when it comes to almost every aspect of the illness - including medications.

I have the internal organ attacking form of SLE - as aposed to joint and muscle pain and this seems to call for a different medication and treatment approach. It all depends on the pattern and severity of the illness.

Over the years I've always taken Prednisolone as my most important drug - as steroid sparing meds I've taken Azathiaprine - and now instead of this I use Myfortc - which is an easy on the gut form of mycophenolate.

Again - I strongly recommend the Lupus UK site as there's a wide variety of patients and the medications they take - new types infusions I've never heard of ??? etc - but please try not to give up on Doctor bothering to find the right treatment for you. They're the only ones qualified to treat you're individual form of Lupus.

I hope you're feeling a bit better than when you posted.

Good luck with it all.

[lupus-support1 Administrator]

Dear Sarah,

I am sorry for the misunderstanding. Lupus is so very complex and hormones do play a part, but certainly not the whole part. This is why more women than men are affected during the child bearing years (9:1).

Fatigue in lupus is common and very debilitating. There are some doctors who research into fatigue in SLE, Chronic Fatigue Syndrome (ME) and ADHD drugs.

Here is some information you may find helpful:

lupus-support.org/LuPUSMB/i...

You will need to register with the LuPUS Message Board (free).

With good wishes,

Ros

[Julietsmombless2015 in reply to lupus-support1]

Yes I think I am going to take him up on getting the medication for ADHD even though I don't have it I have the exact symptoms of it for now anyway until the swelling goes away so I think my appointments like the 27th this month so I think I'm going to go ahead and try it see if it helps apparently it gives you a lot of energy I drink coffee all day long and doesn't really do anything

[lupus-support1 Administrator in reply to Julietsmombless2015]

Keep a diary of your symptoms and mood which will help your doctor.

With good wishes,

Ros

[SecretlyDisabled7]

I go through this, too, although I had a severe accident with brain damage and blamed it all on that. I find peanuts in the bathroom, bathroom items in the kitchen, can't do what is necessary like pay bills because they are lost. It is amazing that we manage to keep going. I have blamed me brain which showed the areas of damage at one time. My last MRI had white matter associated with aging and possible dementia. Not exactly cheerful, but I hope you have some support. I live alone and try to manage. Since I am in the country, there are extra chores and so on. But good luck to you, and to pain relief. I am fortunate enough to have that, at least.